Having had the Autism Spectrum bomb dropped on us last week, it was a case of kick 'em while they're down today as a draft copy of the SEYSCAT report came home with Emily from Dragonflies.
This report is compiled by a number of professionals - paediatrician, occupational therapist, music therapist, Emily's teachers, etc. - as well as from comments from Sue and I.
Woven together into a 9 page document it played out rather damningly. As much as Sue and I want to put our head in the sand and believe that Emily's only brushing the end of the spectrum and she's 99% OK, this report brought us straight back into reality.
I won't go through everything it said as it makes for some sad reading, but it picked up on her fine and gross motor skills being underdeveloped; her language being well behind - which is no secret. It even mentioned the way she walked down the stairs - preferring both feet on one step and then putting one forward - as being immature. I didn't even notice it until this evening. BTW, walking upstairs was fine.
The report did end saying she's happy, bright, and all the other positives that you can pretend even start to balance out the negatives. There were also some strategies that Sue and I have to continue to take on board - MORE inset puzzles, for instance.
It's not going to be an easy ride and every time we think we can cope, we keep getting knocked down another peg on the Parents Who Can Deal With Their Child's Disorder (PWCDWTCD) chart. Hopefully the bad news will stop coming and we can turn this situation around.
As Sue said, she's only three, so all hope is NOT lost, but it will take a lot of effort from us. It will also possibly take a major change in lifestyle and the way we do things to accommodate Emily's condition. If it results in future results being more positive, it can only be worth it.
Tuesday, 24 January 2012
Monday, 23 January 2012
New Year's Resolution
Apart from getting back into shape (recent photos are NOT flattering), I've decided that my priority new year's resolution is to be much more tolerant with Emily.
Given her recent prognosis and the fact that she DOES drive us mental with her meltdown and seemingly erratic behaviour sometimes, I really need to count to 10 and not lose my rag with her more than I do.
However, with her reaction to breakfast this morning and subsequent meltdown, I don't think I could have chosen a more difficult resolution... but resolute I stayed.
Arghhh.... we'll see which one lasts longest - the gym or Emily.
Given her recent prognosis and the fact that she DOES drive us mental with her meltdown and seemingly erratic behaviour sometimes, I really need to count to 10 and not lose my rag with her more than I do.
However, with her reaction to breakfast this morning and subsequent meltdown, I don't think I could have chosen a more difficult resolution... but resolute I stayed.
Arghhh.... we'll see which one lasts longest - the gym or Emily.
Wednesday, 18 January 2012
It's official. Emily is on the autism spectrum
We met with Emily's head teacher and the local paediatrician (who works closely with Dragonflies) today. It was vaguely billed as "assessment day".
We were told what we'd assumed for ages - that Emily is on the autism spectrum.
However, like all things, there is hope and light at the end of the tunnel. It just might be a different tunnel from the rest of us. We discussed continued learning, whether she'd be able to function as a normal member of society, get an education, etc.
The immediate strategy for Sue and I is to continue Emily's communication, but as we discussed, it really needs to be on her terms. She will talk - and we were told 50/50 that kids in Emily's situation (or worse) talk before they're five - but talking is a part of communication.
Emily already lets us know certain things - she'll bring us a plate or a cup; she'll grab your hand and lead you to the bookshelf; she'll sit on the kitchen floor when she needs to go potty; she'll make your finger point to the phone screen or tablet screen when she wants to see something (invariably a Hairy Maclary video).
I'm not too concerned about Emily getting her point across, it's just that society dictates people get their point across in a conformist manner. Emily can't go into a Cafe Nero when she's 16 and grab the cashier's finger and point at the board for what she wants.
The outcome today was that, with our continued support, there's no reason Emily can't have a fulfilling life and become the world expert in whatever she wants - she just won't probably be a "frontline" worker... so she won't be the Cafe Nero cashier... she might OWN Cafe Nero, though.
We were told what we'd assumed for ages - that Emily is on the autism spectrum.
However, like all things, there is hope and light at the end of the tunnel. It just might be a different tunnel from the rest of us. We discussed continued learning, whether she'd be able to function as a normal member of society, get an education, etc.
The immediate strategy for Sue and I is to continue Emily's communication, but as we discussed, it really needs to be on her terms. She will talk - and we were told 50/50 that kids in Emily's situation (or worse) talk before they're five - but talking is a part of communication.
Emily already lets us know certain things - she'll bring us a plate or a cup; she'll grab your hand and lead you to the bookshelf; she'll sit on the kitchen floor when she needs to go potty; she'll make your finger point to the phone screen or tablet screen when she wants to see something (invariably a Hairy Maclary video).
I'm not too concerned about Emily getting her point across, it's just that society dictates people get their point across in a conformist manner. Emily can't go into a Cafe Nero when she's 16 and grab the cashier's finger and point at the board for what she wants.
The outcome today was that, with our continued support, there's no reason Emily can't have a fulfilling life and become the world expert in whatever she wants - she just won't probably be a "frontline" worker... so she won't be the Cafe Nero cashier... she might OWN Cafe Nero, though.
Tuesday, 17 January 2012
Reading recognition
Emily is now able to recite - from memory - 99% of Hairy Maclary's Bone, which is amazingly impressive. She gets stuck on who can't make it out of the building site, all cluttered and stoney.
Today she unveiled the latest addition to her vocabulary - "upside down". Of course, this being a small child the words actually sound like "up is down". I thought at first that she was espousing some existential philosophy until I noticed that the book she was looking at was indeed "upside down".
Previously, she'd look at a book upside down, right side up, left side right, whatever and not really care, as long as there were pictures to be seen and a story to be told to her. It's quite impressive that she's starting to make the distinction between what is correct and what is off kilter.
Today she unveiled the latest addition to her vocabulary - "upside down". Of course, this being a small child the words actually sound like "up is down". I thought at first that she was espousing some existential philosophy until I noticed that the book she was looking at was indeed "upside down".
Previously, she'd look at a book upside down, right side up, left side right, whatever and not really care, as long as there were pictures to be seen and a story to be told to her. It's quite impressive that she's starting to make the distinction between what is correct and what is off kilter.
Sunday, 15 January 2012
Crappy times
It happens. You go out for the afternoon and you forget nappies. OR you mistaken the newborn nappies for your toddler's nappies.
The fun is when the toddler REALLY REALLY REALLY needs the forgotten nappies.
This happened yesterday when we went out for a nice relaxed four hour lunch (or as small children refer to it "a prison sentence").
Emily was thirsty and managed to neck back about 3 glasses of orange juice before settling down. This always bodes well the other end.
Anyway, we changed her once quite early one due to this intake. The next change was signalled by the upturned nose whenever her backside wandered by.
Fair enough.
However, that's where the nappy supply ended. The demand, however, continued in some sort of horrible economics example gone awry.
I ended up having to scoop her "produce" out of the second nappy to give her more room for manufacturing. Of course, to teach daddy a lesson, Emily took this opportunity to have a nice warm wee all over my hands and the floor.
This being an adult restaurant, there were that many places conducive to changing a child's nappy. As it was, the delicate exercise of "remove, scoop out, and reattach" resulted in some of Emily's "produce" going places it wasn't intended - her knee, the back of her leg, etc.
She was cleaned up as best as possible, given the circumstances, but at this point she'd pretty much booked herself a bath at the very EARLIEST convenience.
Thankfully nappy-wise, as we'd brought far too many Holly-sized nappies, we were able to pad Emily's full stinky nappy with a new fresh Holly nappy until we got back to change her properly.
It's strange how the promise of a rather relaxed languid lunch can turn into a toilet fiasco of the highest order. The sooner we toilet train Emily, the better everyone (well, me) will be,
The fun is when the toddler REALLY REALLY REALLY needs the forgotten nappies.
This happened yesterday when we went out for a nice relaxed four hour lunch (or as small children refer to it "a prison sentence").
Emily was thirsty and managed to neck back about 3 glasses of orange juice before settling down. This always bodes well the other end.
Anyway, we changed her once quite early one due to this intake. The next change was signalled by the upturned nose whenever her backside wandered by.
Fair enough.
However, that's where the nappy supply ended. The demand, however, continued in some sort of horrible economics example gone awry.
I ended up having to scoop her "produce" out of the second nappy to give her more room for manufacturing. Of course, to teach daddy a lesson, Emily took this opportunity to have a nice warm wee all over my hands and the floor.
This being an adult restaurant, there were that many places conducive to changing a child's nappy. As it was, the delicate exercise of "remove, scoop out, and reattach" resulted in some of Emily's "produce" going places it wasn't intended - her knee, the back of her leg, etc.
She was cleaned up as best as possible, given the circumstances, but at this point she'd pretty much booked herself a bath at the very EARLIEST convenience.
Thankfully nappy-wise, as we'd brought far too many Holly-sized nappies, we were able to pad Emily's full stinky nappy with a new fresh Holly nappy until we got back to change her properly.
It's strange how the promise of a rather relaxed languid lunch can turn into a toilet fiasco of the highest order. The sooner we toilet train Emily, the better everyone (well, me) will be,
Monday, 2 January 2012
A tale of two poos
Emily's getting better at going to the loo (loo, loo). Today we went on the toilet, as opposed to the potty and she did two mighty logs... which visibly took it out of her. Congratulations were given by all adults in the house.
Holly on the other hand should be on Britain's Got Talent. Her backside is like a fire hydrant. A gentle tickle to clean it results in a spurting jet of yellowy-green poo squirting everywhere. Last night offering was double the pleasure, double the fun as she had a squirty wee at the same time. The amount of towels we have to change is a given, but the amount of flying wee-soaked jumpers I have to change is getting out of hand.
The midwife told us that the bum geyser was to be expected, so it shouldn't be too much of a shock. Why it is every time is still beyond me. I (and my jumpers) can't wait until this phase passes, really.
Holly on the other hand should be on Britain's Got Talent. Her backside is like a fire hydrant. A gentle tickle to clean it results in a spurting jet of yellowy-green poo squirting everywhere. Last night offering was double the pleasure, double the fun as she had a squirty wee at the same time. The amount of towels we have to change is a given, but the amount of flying wee-soaked jumpers I have to change is getting out of hand.
The midwife told us that the bum geyser was to be expected, so it shouldn't be too much of a shock. Why it is every time is still beyond me. I (and my jumpers) can't wait until this phase passes, really.
Saturday, 31 December 2011
Goodbye 2011. Welcome 2012
2011 has been quite a year for our children in many ways. Firstly Sue got preggers in (or around) March and spent the rest of the year getting larger and tireder. Emily celebrated her third birthday in March as well.
Emily also started her Dragonflies school in September, which has been a godsend.
Lastly, we welcomed Holly Grace into our little family only days ago (26th December).
Through the year, Emily has started to gain her own voice and personality. Things she used to do as a matter of us asking she now questioned and pushed back on (mostly food related). She also figured out how to be moody and angry and sulk (the number of times I've had to recently pick her screaming body off the floor in a shop, etc. are too numerous to count) ... and basically do all the terrible two things a child does at the age of two, a year late.
Emily still hasn't got around to accepting Holly, but that will come. I've taken great pains to ensure that Emily doesn't feel left out, and hopefully 2012 will prove to be quite a year for both our children.
Emily also started her Dragonflies school in September, which has been a godsend.
Lastly, we welcomed Holly Grace into our little family only days ago (26th December).
Through the year, Emily has started to gain her own voice and personality. Things she used to do as a matter of us asking she now questioned and pushed back on (mostly food related). She also figured out how to be moody and angry and sulk (the number of times I've had to recently pick her screaming body off the floor in a shop, etc. are too numerous to count) ... and basically do all the terrible two things a child does at the age of two, a year late.
Emily still hasn't got around to accepting Holly, but that will come. I've taken great pains to ensure that Emily doesn't feel left out, and hopefully 2012 will prove to be quite a year for both our children.
Tuesday, 27 December 2011
It's all in a name
We narrowed it down to Chloe, Olivia or Holly.
While Emily and I went for lunch, both Sue and I seemed to have the same mental conversation with outselves - that Olivia just wasn't "soft" enough for a little girl, the way Emily is. We could go for a Livvy or similar, but it just didn't take.
When we got back from lunch, Sue said it could and probably should be Holly as it was a nicer, softer name.
We proceeded to call her Holly from that point on. However, Sue had previously written the three names on pieces of paper ready to pull out of a hat to see which name would rule. In the meantime, they'd fallen on the ground.
We proceeded to ask Emily to pick up the paper and give them to Sue. We read them in the order Emily handed them to Sue - first was Holly, second was Chloe and third was Olivia.
Thanks to Emily's fate-driven hand, our child was confirmed to be called Holly, middle name Grace. I couldn't slip the comedic Holly Esther in there unfortunately.
While Emily and I went for lunch, both Sue and I seemed to have the same mental conversation with outselves - that Olivia just wasn't "soft" enough for a little girl, the way Emily is. We could go for a Livvy or similar, but it just didn't take.
When we got back from lunch, Sue said it could and probably should be Holly as it was a nicer, softer name.
We proceeded to call her Holly from that point on. However, Sue had previously written the three names on pieces of paper ready to pull out of a hat to see which name would rule. In the meantime, they'd fallen on the ground.
We proceeded to ask Emily to pick up the paper and give them to Sue. We read them in the order Emily handed them to Sue - first was Holly, second was Chloe and third was Olivia.
Thanks to Emily's fate-driven hand, our child was confirmed to be called Holly, middle name Grace. I couldn't slip the comedic Holly Esther in there unfortunately.
Monday, 26 December 2011
New arrival
Our new arrival came at 11.45 this morning. She looks quite fine and is currently having a feed on mummy. We're still trying to figure out which of our name list she suits.
I had a nice 15 minute cuddle whilst they stitched Sue back up. There's a lot of newborn stuff I've forgotten. It's going to be quite the learning curve again.
I had a nice 15 minute cuddle whilst they stitched Sue back up. There's a lot of newborn stuff I've forgotten. It's going to be quite the learning curve again.
Almost there
The doctor's been round, we've had a nice chat and we should be going into the operating theatre in the next 20 minutes or so.
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